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PMR, Prednisone, flare

Posted , 11 users are following.

kathy67492
kathy67492

Since I am in the middle of a flare...tried t go from 7-1/2 to 7m...disaster! After 2-1/2 years into this PMR you would think I would be able to tell when tapering is a problem...will I NEVER learn?! Takes me at least a month to re-stabilize after misjudging a taper. I am now at 9m and feeling so much better....but so AFRAID TO EVER TAPER AGAIN!....it is such a painful setback.

2 likes, 18 replies

18 Replies

  • linda06830
    linda06830 kathy67492

    Posted

    I'm well into 3 years of PMR and am stuck at 9mg of prednisone.  Every time I try to reduce from there, I feel horrible and this last time I tried, I ended up using a cane to walk as my knee (above and below the joint) was horrifically painful, so back I went to 9mg.  Have a rheumy appt in 2 wks. and not sure what he will say.  I have tried other steroid sparing drugs along with the prednisone and the majority of them make me sick and this last one has done nothing.  Hang in there, Kathy, and hopefully remission will be in our futures.

     

    • kathy67492
      kathy67492 linda06830

      Posted

      It s true, misery loves company😊 Good to know the drug-sparing drugs are not much use...I have been reluctant to try them!
  • FlipDover_Aust
    FlipDover_Aust kathy67492

    Posted

    I feel your pain, I really do. I recently had to go back to 7.5 from 5mg....

    and you wonder why you were so foolish in the first place when YOU KNOW WHAT TO DO!!!

    lololol

  • Daniel1143
    Daniel1143 kathy67492

    Posted

    Did you drop down like a stone, or did you ease your way down. What most of us have found is that easing is better.  By this I mean (for example) alternating days at 7.5 and 7 mg for a few weeks before the next phase. Many recommend much slower than that.
    • maid_mariane
      maid_mariane Daniel1143

      Posted

      I cannot drop using alternate days. I use a method like the drop dead slow but even longer.

      If i used alternating days i would be in pain.

      The other thing is the majority of people stabalize for min. 6 mos at 10mg before tappering again. Did you do this.

      Good luck

      Mariane

    • kathy67492
      kathy67492 Daniel1143

      Posted

      I keep being kicked out today on this website...

      I used the super DSNS method...had been on 7-1/2m, doing well...took 7m one day, 7.5m for 6 days...7m, then 7.5 for 5 days, etc...for the whole month of July. After 25 days I flared (I had only "missed" 3m of prednisone)! I was a mess. Went back up to 9 and starting to feel better.

      The 9m has "fixed" my foot problem...but I still have niggles here and there.  I had been "stable" @ 7-1/2m for over 12 weeks

      thanks for your input??

  • EileenH
    EileenH kathy67492

    Posted

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    There is a very slow reduction scheme in the replies part of the thread this link takes you to. If you are honest and DON'T deny the signs of a flare you can stop further reduction immediately and go back to where you were OK before trouble sets in. The sooner you react the less trouble arises - and then you have another go a few months later.

    Seven is a pretty low dose - there is no hurry and it may be where you stop for now. It doesn't mean you won't get there eventually. You simply are not reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms. Maybe 7.5 is it.

    • kathy67492
      kathy67492 EileenH

      Posted

      I guess my adled brain was thinking the pain was from prednisone withdrawal! I used to have migraines and would do the same thing...not take the medicine...denial!...u til it was too late.

      Thank you for the link😊

    • jancorb
      jancorb EileenH

      Posted

      HiEileen

      I haven't been on this site for some time , reason being I got to 10 mgs with no problems, at 9 mgs started with serious back pain. But my blood tests still normal. My GP concluded I had overdone gardening, and to go to 8 mg. I'm now back in bed, pain worse and terrible fatigue. Yesterday I went back to 9 mg and not as bad today, would you recommend back to 10? Then a slow taper? Many thanks Janet

    • EileenH
      EileenH jancorb

      Posted

      If you are on pred it is very common for the acute phase reactants (ESR and CRP) not to rise or to take a long time to rise, despite a flare. 

      Your GP doesn't have a clue does he? Even if the pain is NOT due to the PMR it is enough trauma for you to struggle even more with a reduction than you would normally. You never try to reduce when you are struggling with ANY other problem.

    • jancorb
      jancorb EileenH

      Posted

      Hi Eileen,

      As I thought, my GP not appreciating the seriousness of a flare. I spoke to my daughter in law this morning, she is a GP, she was surprised at me being switched down when having problems. She was also surprised at me being reduced from 9 mgs down to 8 after only 3 weeks, she would recommend six weeks at 9 mgs.

      I'm feeling a lot better this evening, so plan to stay on 9 mgs for 3 weeks then all being well slowly taper down to 8.

      I'll print off the 2012 recommendations and have them to hand next time I visit the doctors.

    • EileenH
      EileenH jancorb

      Posted

      Your DIL sounds far more on the ball - I'd discuss it all with her. And yes, 3 weeks at any dose now is not enough. It isn't a race now...

  • snapperblue
    snapperblue kathy67492

    Posted

    Rude awakening, isn't it?  Your taper is going so well, the schedule you are following is working just fine, then, KA-WHAM!!  That tiny little 1/2 mg change and everything blows up again.

    As you know, the PMR stays around as long as it stays around, and you will just have to keep taking the prednisone until the underlying cause gives up and goes away. Even though you are well and truly sick of this and think it is time the &%$!! thing went away, nope. 

    If you were doing well- really well- at 7-1/2, that may be the dose that will control the symptoms and a reasonable goal for you to SLOWLY approach after you are fully recovered from this flare.  It is like being an athlete with an injury, you cannot rush it.

    We often come to equate reducing the dose to "progress," so it feels like we are falling back when we have to increase the dose again.  But you know you have not failed in any way- you just have a case of PMR that is taking a little longer.

    All I can do is offer empathy and counsel patience, so easy to advise someone else, so hard to truly accept.  

    As Winston Churchill (obviously not a biologist) once wrote, "Thus the beaver builds his dam, and thus when his fishing is about to begin, comes the flood and sweeps his work and luck and fish away together.  So he has to begin again."

     

    • kathy67492
      kathy67492 snapperblue

      Posted

      You are so right! I do accept responsibility for thinking I was getting "better"...doing more because the inflammation seemed to be under control...back to the spoon theory!!

       

    • jancorb
      jancorb kathy67492

      Posted

      Hi Kathy

      I kno exactly how you feel, I felt so good at 10 mgs I doubted the diagnosis But now at 8 mg and have hit that wall again , just messaged Eileen, thinking I'll go back to 10 mg and taper very slowly from now on. Take care , regards Janet

    • EileenH
      EileenH kathy67492

      Posted

      The RESULT of the inflammation process is under control as long as you are on enough pred - not the same thing at all!

      I wrote a post about 6 years ago called "how much difference can 1/2mg make" or something like that...

    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      Must look that one up Eileen.  Right now I'm shakily moving down by 1/4mg. (ie. from 2.0 to 1.75).  OK so far. . . . .  J

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